Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview

S Fox, A Cashell, WG Kernohan, M Lynch, C McGlade, A O’Brien, SS O’Sullivan, M Foley, S Timmons

Research output: Contribution to journalArticle

8 Citations (Scopus)

Abstract

Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research withhealthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Somehealthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views ofpeople with Parkinson’s disease and their carers about palliative care.Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) toexamine perceptions about/understanding of palliative care.Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), acrossthree Movement Disorder Clinics in the Republic of Ireland.Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the roleof palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a highillness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later,with advancing illness. Participants wanted more information about palliative care and especially further supports to address theirpsychosocial needs.Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced bypeople with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care.Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.
LanguageEnglish
Pages634-641
JournalPalliative Medicine
Volume31
Issue number7
Early online date28 Sep 2016
Publication statusPublished - 1 Jul 2017

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Palliative Care
Caregivers
Parkinson Disease
Interviews
Delayed Diagnosis
Movement Disorders
Ireland
Research
Fear
Referral and Consultation

Keywords

  • Parkinson disease
  • caregivers
  • palliative care
  • qualitative research
  • quality of life

Cite this

Fox, S., Cashell, A., Kernohan, WG., Lynch, M., McGlade, C., O’Brien, A., ... Timmons, S. (2017). Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview. Palliative Medicine, 31(7), 634-641.
Fox, S ; Cashell, A ; Kernohan, WG ; Lynch, M ; McGlade, C ; O’Brien, A ; O’Sullivan, SS ; Foley, M ; Timmons, S. / Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview. In: Palliative Medicine. 2017 ; Vol. 31, No. 7. pp. 634-641.
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abstract = "Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research withhealthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Somehealthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views ofpeople with Parkinson’s disease and their carers about palliative care.Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) toexamine perceptions about/understanding of palliative care.Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), acrossthree Movement Disorder Clinics in the Republic of Ireland.Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the roleof palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a highillness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later,with advancing illness. Participants wanted more information about palliative care and especially further supports to address theirpsychosocial needs.Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced bypeople with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care.Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.",
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note = "Reference text: References 1. Dorsey ER, Constantinescu R, Thompson JP, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology 2007; 68: 384– 386. 2. Miyasaki JM, Long J, Mancini D, et al. Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD. Parkinsonism Relat Disord 2012; 18(Suppl. 3): S6–S9. 3. Hudson PL, Toye C and Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med 2006; 20: 87–94. 4. Weafer JA. The palliative care needs of people with advancing neurological disease in Ireland: a report prepared for the Neurological Alliance of Ireland and the Irish Hospice Foundation. Dublin, 2014, http://lenus.ie/hse/bitstream/ 10147/333684/1/Palliative+care+needs+of+people +with+advancing+neurological+disease+in+Ireland.pdf 5. Boersma I, Miyasaki J, Kutner J, et al. Palliative care and neurology: time for a paradigm shift. Neurology 2014; 83: 561–567. 6. NHS England (formerly the National End of Life Care Programme). End of life in long term neurological conditions: a framework for implementation, http://www.nai.ie/ assets/98/E29C88A6-9CA5-06B3-E74D285E3C0695A2_ document/End_20life_20care_20long_20term_20neuro_20conditions.pdf 7. Department of Health and Children. Report of the national advisory committee on palliative care. Dublin, 2001, http://hospicefoundation.ie/wp-content/uploads/2012/07/ Report-of-the-National-Advisory-Committee-on-Palliative-Care-2001.pdf 8. Fox S, Gannon E, Cashell A, et al. Survey of health care workers suggests unmet palliative care needs in Parkinson’s disease. Mov Disord Clin Pract 2015; 2: 142–148. 9. Walker RW, Churm D, Dewhurst F, et al. Palliative care in people with idiopathic Parkinson’s disease who die in hospital. BMJ Support Palliat Care 2014; 4: 64–67. 10. Richfield EW, Jones EJ and Alty JE. Palliative care for Parkinson’s disease: a summary of the evidence and future directions. Palliat Med 2013; 27: 805–810. 11. McLaughlin D, Hasson F, Kernohan WG, et al. Living and coping with Parkinson’s disease: perceptions of informal carers. Palliat Med 2011; 25: 177–182. 12. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med 2010; 24: 731–736. 13. Giles S and Miyasaki J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–125. 14. Phillips LJ. Dropping the bomb: the experience of being diagnosed with Parkinson’s disease. Geriatr Nurs 2006; 27: 362–369. 15. Birgersson A-MB and Edberg A-K. Being in the light or in the shade: persons with Parkinson’s disease and their partners’ experience of support. Int J Nurs Stud 2004; 41: 621–630. 16. Hinnell C, Hurt CS, Landau S, et al. Nonmotor versus motor symptoms: how much do they matter to health status in Parkinson’s disease? Mov Disord 2012; 27: 236–241. 17. Fox S, Cashel A, Kernohan WG, et al. Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing. BMC Palliat Care 2016; 15: 15. 18. Waldron M, Kernohan WG, Hasson F, et al. Allied health professional’s views on palliative care for people with advanced Parkinson’s disease. Int J Ther Rehabil 2011; 18: 48–58. 19. Goy ER, Carter JH and Ganzini L. Needs and experiences of care-givers for family members dying with Parkinson disease. J Palliat Care 2008; 24: 69–75. 20. INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh, 2012, http://www.invo.org.uk/wp-content/ uploads/2012/04/INVOLVEBriefingNotesApr2012.pdf 21. Tong A, Sainsbury P and Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349–357. 22. Tuck KK, Brod L, Nutt J, et al. Preferences of patients with Parkinson’s disease for communication about advanced care planning. Am J Hosp Palliat Care 2015; 32: 68–77.",
year = "2017",
month = "7",
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volume = "31",
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}

Fox, S, Cashell, A, Kernohan, WG, Lynch, M, McGlade, C, O’Brien, A, O’Sullivan, SS, Foley, M & Timmons, S 2017, 'Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview', Palliative Medicine, vol. 31, no. 7, pp. 634-641.

Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview. / Fox, S; Cashell, A; Kernohan, WG; Lynch, M; McGlade, C; O’Brien, A; O’Sullivan, SS; Foley, M; Timmons, S.

In: Palliative Medicine, Vol. 31, No. 7, 01.07.2017, p. 634-641.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Palliative care for Parkinson’s disease:Patient and carer’s perspectives explored through qualitative interview

AU - Fox, S

AU - Cashell, A

AU - Kernohan, WG

AU - Lynch, M

AU - McGlade, C

AU - O’Brien, A

AU - O’Sullivan, SS

AU - Foley, M

AU - Timmons, S

N1 - Reference text: References 1. Dorsey ER, Constantinescu R, Thompson JP, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology 2007; 68: 384– 386. 2. Miyasaki JM, Long J, Mancini D, et al. Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD. Parkinsonism Relat Disord 2012; 18(Suppl. 3): S6–S9. 3. Hudson PL, Toye C and Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med 2006; 20: 87–94. 4. Weafer JA. The palliative care needs of people with advancing neurological disease in Ireland: a report prepared for the Neurological Alliance of Ireland and the Irish Hospice Foundation. Dublin, 2014, http://lenus.ie/hse/bitstream/ 10147/333684/1/Palliative+care+needs+of+people +with+advancing+neurological+disease+in+Ireland.pdf 5. Boersma I, Miyasaki J, Kutner J, et al. Palliative care and neurology: time for a paradigm shift. Neurology 2014; 83: 561–567. 6. NHS England (formerly the National End of Life Care Programme). End of life in long term neurological conditions: a framework for implementation, http://www.nai.ie/ assets/98/E29C88A6-9CA5-06B3-E74D285E3C0695A2_ document/End_20life_20care_20long_20term_20neuro_20conditions.pdf 7. Department of Health and Children. Report of the national advisory committee on palliative care. Dublin, 2001, http://hospicefoundation.ie/wp-content/uploads/2012/07/ Report-of-the-National-Advisory-Committee-on-Palliative-Care-2001.pdf 8. Fox S, Gannon E, Cashell A, et al. Survey of health care workers suggests unmet palliative care needs in Parkinson’s disease. Mov Disord Clin Pract 2015; 2: 142–148. 9. Walker RW, Churm D, Dewhurst F, et al. Palliative care in people with idiopathic Parkinson’s disease who die in hospital. BMJ Support Palliat Care 2014; 4: 64–67. 10. Richfield EW, Jones EJ and Alty JE. Palliative care for Parkinson’s disease: a summary of the evidence and future directions. Palliat Med 2013; 27: 805–810. 11. McLaughlin D, Hasson F, Kernohan WG, et al. Living and coping with Parkinson’s disease: perceptions of informal carers. Palliat Med 2011; 25: 177–182. 12. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med 2010; 24: 731–736. 13. Giles S and Miyasaki J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliat Med 2009; 23: 120–125. 14. Phillips LJ. Dropping the bomb: the experience of being diagnosed with Parkinson’s disease. Geriatr Nurs 2006; 27: 362–369. 15. Birgersson A-MB and Edberg A-K. Being in the light or in the shade: persons with Parkinson’s disease and their partners’ experience of support. Int J Nurs Stud 2004; 41: 621–630. 16. Hinnell C, Hurt CS, Landau S, et al. Nonmotor versus motor symptoms: how much do they matter to health status in Parkinson’s disease? Mov Disord 2012; 27: 236–241. 17. Fox S, Cashel A, Kernohan WG, et al. Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson’s disease: a definite role but uncertainty around terminology and timing. BMC Palliat Care 2016; 15: 15. 18. Waldron M, Kernohan WG, Hasson F, et al. Allied health professional’s views on palliative care for people with advanced Parkinson’s disease. Int J Ther Rehabil 2011; 18: 48–58. 19. Goy ER, Carter JH and Ganzini L. Needs and experiences of care-givers for family members dying with Parkinson disease. J Palliat Care 2008; 24: 69–75. 20. INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh, 2012, http://www.invo.org.uk/wp-content/ uploads/2012/04/INVOLVEBriefingNotesApr2012.pdf 21. Tong A, Sainsbury P and Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349–357. 22. Tuck KK, Brod L, Nutt J, et al. Preferences of patients with Parkinson’s disease for communication about advanced care planning. Am J Hosp Palliat Care 2015; 32: 68–77.

PY - 2017/7/1

Y1 - 2017/7/1

N2 - Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research withhealthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Somehealthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views ofpeople with Parkinson’s disease and their carers about palliative care.Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) toexamine perceptions about/understanding of palliative care.Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), acrossthree Movement Disorder Clinics in the Republic of Ireland.Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the roleof palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a highillness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later,with advancing illness. Participants wanted more information about palliative care and especially further supports to address theirpsychosocial needs.Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced bypeople with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care.Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.

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KW - Parkinson disease

KW - caregivers

KW - palliative care

KW - qualitative research

KW - quality of life

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